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Your Rights at School

Schools have a legal responsibility

Your school has a responsibility to make sure you are supported:

  • Equality laws mean you cannot be discriminated against at school. Your school must make reasonable adjustments to help you.
  • Your school should have things in place to support you including a written policy for supporting students with medical conditions and staff training. You should also have an Individual Healthcare Plan which provides information about your epilepsy.
  • You may be entitled to support for special educational needs at school.
  • You may be able to get help with exams known as “access arrangements”. If your epilepsy means you can’t do an exam or your ability to do the exam is affected, you could have your marks adjusted.

As a young person with epilepsy, you have certain rights at school. It is your school’s responsibility to make sure you have the support you need. But it can help to know your rights and what you are entitled to.

Graphic design representing the Young Epilepsy Guide for Schools.

You could share Young Epilepsy's Guide for Schools with your parents or carers and your school. It has lots of information for schools about how to support students with epilepsy.

Click here to find out about the Guide for Schools

What are my rights?

In England, Wales and Scotland the Equality Act means it is against the law for schools to discriminate against you because you have a disability. In Northern Ireland, the Special Educational Needs and Disability (NI) Order means it is against the law for schools to discriminate against you because you have a disability.

You may not think of yourself as disabled. But epilepsy is a disability when it has a substantial and long-term effect on your day-to-day activities, or it would if you were not on treatment.

Reasonable adjustments

Your school must make sure you have full access to education.  They have a legal obligation to support you and remove any barriers you face so you can access and take part the same way as students who do not have a disability. To do this your school must make reasonable adjustments.

Reasonable adjustments are changes your school must make so you are not at a disadvantage compared to other students who do not have a disability. They are specific to you and your needs. They could include:

  • Providing different coloured paper to write on.
  • Allowing extra time to respond to questions or complete work.
  • Allowing regular breaks.
  • Providing technology, like a laptop.
  • Using different ways to record work such as video or audio recordings

Schools are legally obliged to work with you, your family or carers and any other professionals involved to agree the support you need.

Your school is responsible for making a record of what reasonable adjustments have been agreed and making sure all staff who work with you know about them.

Whether something is reasonable will depend on different things, like:

  • If the adjustment is practical.
  • The cost.
  • Whether it will help.
  • Any potential negative impact on others.

Will epilepsy affect my learning?

Different people have different experiences of how epilepsy affects them at school. Not every young person with epilepsy will experience difficulties learning. But some people may find they have more difficulty learning than students who don’t have epilepsy. Reasons for this can include:

  • Seizures and the impact they have such as feeling tired or losing concentration.
  • Side effects of anti-seizure medication such as a lack of energy or drowsiness.
  • Other conditions such as autism or ADHD (attention deficit hyperactivity disorder).
  • Any underlying cause of epilepsy, such as a brain injury.

You may experience problems with:

  • Listening to and understanding information and finding the right words (communication)
  • Memory and concentration (cognition)
  • Coordination. For example, finding it difficult to write, kick a ball or hit a ball with a bat (motor skills)

These can affect your learning. But there are lots of things your school can do to support you, including:

  • Repeating and rephrasing information.
  • Using visual prompts and aids.
  • Providing information in chunks.
  • Recapping information.
  • Allowing additional time.
  • Adapting tasks or activities.

If you are having difficulties speak to your teachers, family or carers. They are there to help you.

Young Epilepsy has developed the ABLE tool (Assessment of Behaviour and Learning in Epilepsy). It aims to help your teachers, parents or carers understand more about how epilepsy affects you and help them make sure you have the support you need.

What should my school have in place to support me?

There are various things your school should put in place to support you.

What should my school have in place to support me?

A written policy for supporting students with medical conditions

This should explain what your school has in place to make sure you are safe and included. The policy may be available on your school website. You might want to ask your parents or carers to speak to the school about it, or you can ask about it yourself.

What should my school have in place to support me?

An Individual Healthcare Plan

An Individual Healthcare Plan (IHP) is a document that records important information about your epilepsy. Any child with a medical condition should have one. They have different names in different parts of the UK. It should include information about your epilepsy including the types of seizures you have, how you manage your epilepsy and how it affects your learning and behaviour, including any anti-seizure medication side effects. It should also include what to do in an emergency. The plan should be developed between you, your parents or carers, your school and your healthcare team. The school is responsible for implementing the plan. But it is important to let the school know about any changes to your epilepsy. 

What should my school have in place to support me?

Training

Any members of staff who will be supporting you should receive appropriate training. Your school could also provide awareness sessions for pupils. This can help them to understand more about epilepsy and help you feel more confident. Some young people with epilepsy raise awareness themselves by speaking about epilepsy in an assembly or to their class. If this is something you would like to do talk to your school.

What are special educational needs?

Special educational needs refer to any difficulties you have that make it harder to learn compared to other students your age. They can include difficulties with:

  • Reading and writing.
  • Your ability to understand things.
  • Behaviour.
  • Concentration.
  • Physical abilities.

How do I get special educational needs support at school?

Depending on where in the UK you live different terms will be used for special educational needs.

You have Special Educational Needs (SEN) if you find it much harder to learn compared to other students your age, or if you have a disability that prevents you from accessing school. If your parents or carers think you have SEN, they should speak to any professional involved in your care or the special educational needs coordinator (SENCo) at your school.

If you need more help, you may be able to get an Education, Health and Care (EHC) plan. You will need an education, health and care needs assessment to find out if you’re entitled to an EHC plan. These are carried out by your local authority. Your parents or carers, or school can ask for one. If you are over 16 you can ask for one yourself. The process can be long and complicated.

If you are aged 16 to 25 and unhappy with the support your school is giving you, you can talk to a teacher, the headteacher or the SENCo. If you are still unhappy after speaking to them, you should follow the school complaints procedure. It should be available on their website. If that doesn’t work, you can contact your local authority. If you want to make a complaint it can be helpful to get support from your parents or carers, or an advocate.

GOV.UK has a guide for young people on SEND complaints which explains your options in more detail.

Contact has more information about special educational needs and disabilities.

You have Additional Support Needs (ASN) if you need extra or different support compared to other students your age. If your parents or carers think you have additional support needs, they should talk to your class teacher or guidance teacher. They can also write to the school to ask for a formal assessment. If the school does not agree you need an assessment, your parents or carers can ask the local authority for an assessment. If you are over 12 you may be able to ask for the assessment yourself.

If you’re aged 12 to 15 My Rights, My Say can help you with your rights to be involved in decisions that affect your learning.

Enquire has more information about additional support for learning and how to resolve problems at school.

You have Additional Learning Needs (ALN) if you need extra support in education. It was previously known as Special Educational Needs (SEN). If you are 16 or over, you will be the main person making decisions. Although you may want to ask your parents and carers for support with decisions.

If you or your parents or carers think you need extra help speak to your school's Additional Learning Needs Coordinator (ALNCo). If it’s decided you have Additional Learning Needs, you will receive support through an Individual Development Plan (IDP).

If you are unhappy about a decision related to your Additional Learning Needs, you can ask the local authority to review it. You might want to get support from your parents or carers or an advocate if you want to challenge a decision about your Additional Learning Needs.

SNAP Cymru has more information on Additional Learning Needs.

You have Special Educational Needs (SEN) if you have a learning problem or disability that makes it more difficult for you to learn than other students your age. If your parents or carers think you need extra support in school, they should talk to your teacher or the person responsible for helping students with special education needs.

nidirect has more information on Special Educational Needs in Northern Ireland.

SENAC can provide information and advice on getting help and support for special educational needs in Northern Ireland.

Can I get help with exams?

Access arrangements

You may be able to get additional support for your exams. These are known as access arrangements. Access arrangements can include:

  • Extra time.
  • Taking exams at a different time of day, such as in the afternoon if you tend to have seizures in the morning.
  • Taking exams in a different place, such as in a room alone, at home or in hospital.
  • A computer.
  • A person to read or write for you.
  • Supervised rest breaks during the exam.
  • Modified test materials such as large print.

Any support you receive should reflect your normal way of working. For example, if you are given extra time to do assessments in class, you are likely to be allowed extra time in exams.

For public exams such as GCSEs or A-levels, schools decide whether support is needed by looking at rules provided by the Joint Council for Qualifications (JCQ). In Scotland, the SQA have more information on assessment arrangements.

For other tests and exams, your parents or carers should check with your school. You should speak to your school as early as possible. There may be deadlines the school needs to meet. However, a late application can be made if your epilepsy gets worse after these.

Special consideration

Special consideration means your exam mark is adjusted after the exam by the exam board. This could apply if:

  • You’re fully prepared for the exam, but your performance is affected by illness, injury or something else beyond your control. For example, if you’re recovering from a seizure.
  • You missed an exam for a valid reason. For example, you have a seizure just before the exam and are unable to attend.

If you think you are eligible for special consideration, you or your parents or carers should speak to your school as soon as possible. They will need to tell the exam board. The exam board will explain what support they can offer and how to apply for it.

Special consideration can also apply to coursework. You or your parents or carers should speak to your school for more information.

  • Contact has more information on help with exams in England.
  • SNAP Cymru has more information on exam support in Wales. 
  • Enquire has more information on support with exams in Scotland.

What should I do if I have problems at school?

If you are having problems at school, you should speak to someone you trust.

If your parents or carers are worried, they can raise concerns with the school. Who they need to speak to will depend on what the concern is about. Usually, it is best to raise any concerns informally first and if that does not work, make a formal complaint.

Contact have more information about raising concerns and complaints.

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